Carla is a mother, humorist and writer. She writes about life, art, politics and the things that scare her.

Saturday, May 01, 2010

I flit, I float, I fleetly flee, I fly...

On Pine Crescent, between Thirty-Fifth and Thirty Fourth, a giant redwood fence covered the double lot down the street from us. The fence was so high we couldn’t see what kind of house lay within, but our imaginations ran wild. Lucky for me, there was a conveniently located knot in the wood and I used it as a peephole. Through the hole, I was able to see a magical bridge over a pond with real lily pads. The other kids told me if you snuck onto the property, you could catch real live tadpoles, but you had to bring your own plastic bag. The trees on the property were this thick canopy so only dappled sunlight could penetrate the firs and maples above. The ground was covered in ferns all of which seemed to love the shady magical space.

I always imagined what kind of people lived there. Some days, I imagined a crusty yet friendly groundskeeper. Other days, he was an evil man who would kidnap me were I to try to pilfer his precious tadpoles.

A little further down the road was Quilchena Park, where we would toboggan in the winter and where our upscale neighborhood’s version of “rumbles” would occur at dusk on a warm summer night. Further still were the train tracks where we would sit and wave to the conductor or put pennies on the tracks and see what happened to them.

Every memory of every little moment is so clear to me. I think that’s one of the blessings of being young. You’re so present to the gifts in front of you that every sense is awakened. I can still remember every smell, the sound of each individual bird, the feeling of the sun at different times of the day, and how it reflected off the grass or the snow or the sand. More and more I find myself back to one of those places. I sleep more than I’m awake and I take a ridiculous number of drugs so it’s not surprising that I’m doing a little time-traveling.

I used to sit under a tree in Quilchena Park and try to write a poem that would be worthy of the beauty around me, but I always failed... partly because I was still stuck on that whole rhyming thing.

The other night, my sheet had trapped my arms while I slept. I woke up and I needed to call my caregiver for help. It was then that I realized I no longer have the arm strength to move a single twin sized sheet. I was unable to ring my call bell and did not have the lung strength to yell for help. I was trapped in my own bed. In this kind of situation, one’s first instinct is to panic. Trust me, this does not help at all. I lay in the bed and this poem by Hafiz came to me.

Dropping Keys

The small man

Builds cages for everyone

He

Knows.

While the sage,

Who has to duck his head

When the moon is low,

Keeps dropping keys all night long

For the

Beautiful

Rowdy

Prisoners.

This poem made me realize that by calling my body a prison, I was that small man. I had to transform the metaphor of body as prison into something else. I imagined my body was a sandbag on a hot air balloon to be hoisted over the edge of the basket in order to gain altitude. I needed to release my body—my sandbag—to allow my imagination to soar.

I told this story at a couple of talks I gave and, apparently, it made an impression on a couple of my caregivers because one of them, Alexa, designed a hot air balloon tattoo and the other, Jenny, agreed along with Alexa to surprise me with matching arm ink. On the day they were supposed to show me their surprise, their tattoo artist flaked and when they came over, I had to tell them that I was no longer eating food and this obviously meant my life expectancy was considerably shorter than we had hoped. They decided not to wait to surprise me, and when they told me their plan, I said, “Aw Hell, what’s one more tattoo?” and agreed to go along with them. My former caregiver/pseudo-daughter, Jamie, flew in from New York just to get the tattoo with us (her first). Here are a few photos from that auspicious evening.

After reading about my tattoo, my brother wrote to me; “I was thinking about you getting a new tattoo and I saw that you had said Dad was considering getting one, too (I thought that part was an April Fool's gag). I briefly considered getting a tattoo myself and then realized that I am just not a tattoo person. I mean, I kept trying to picture some place on my body that I'd be okay having ink permanently injected into it, and I just couldn't find one. I don't have a problem with tattoos, it's just that we get along better from a distance.

But then I was thinking, well, if not a tattoo, what could I do instead that would be an acceptable alternative? I got an idea that I ran by Allison and she liked it. So, we are instituting a new rule in our family. We're going to call it the Auntie Carla rule and we're going to make sure the kids learn it well. The rule is this: At least once a year, you have to do something that you've always wanted to do, or go somewhere you've always wanted to go, or try something that you always wanted to try but scares you a little, or just do something outrageous and worry about the consequences later, or say yes to a ridiculous dare. Basically, it's about saying yes when you usually say no. I'm not so much into skin tattoos, but I think of this as a kind of tattoo of the soul”.Needless to say, this idea for a tribute makes me very happy-a gift that keeps on giving.

Last week, I had a visit from my friend Megan, who also has ALS. She’s Miss December 2010 in the ALS Calendar. It was great to see her, but a little sobering to watch her family dealing with her trache and new feeding tube. In that period, she was using my cough-assist machine, and it looked like she was in a lot of discomfort although she didn’t complain much. The next day, she was rushed to the hospital with double pneumonia (from which she is now recovering, thank goodness). Amidst their horrible family crisis, Megan got her mom to have 160 Gerber daisies delivered to my room. Shehad wanted my entire room to be filled with my favorite flower and she succeeded. I don’t really have words to talk about someone who would be thinking of other people and acting on those thoughts in a time of such great crisis, but from now on, when I think of Megan and her family, here is what I will see:

But let me describe my room pre-160 gerber daisies. My caregivers have strung bright-colored lights all around the room. They have wrapped ribbons around the bars of the hospital bed so you can’t tell how ugly it is. They have pasted butterflies and hummingbirds on the walls. Alexa has made terrariums for the window, and brought me a giant brass Om. They have hidden the medical equipment under tapestries and tablecloths. The colors are deep and rich and lively. And Kathy just bought me a fresh copy of my favorite novel, so everyone can be reading from the same book when they read to me. Obviously, my preference would be to get out and lead my normal life, but that is not the plan, so a magical world has been created right here.

Mac came to see me last weekend and I was telling him about a visit from another young person who has ALS. His name is Corey Reich and his ALS mercifully is progressing relatively slowly. Mac said to me, “It makes me sad to think that Corey will one day be in the kind of shape you are,” and I agreed and pondered aloud why a reasonably healthy, fantastic young guy like that would want to visit someone who is a) older than his mom and b) a harbinger of things to come and Mac says, “It seems like a weird thing to do, but don’t forget: you’re a cool dude.” You have no idea what it feels like to have your teenage son tell you “you’re a cool dude.” It may be one of the peak moments of my life.

In my conversations with Mac, my dad, and others, I’ve realized that there’s actually nothing for me to be upset about. Everything I fear and dread is going to happen in the future and it’s not happening now. Therefore, I’m doing what I call “pre-emptive worrying.” The reality is when all of the things that I dread come to pass, I won’t exist but my other loved ones will have to deal with their grief, loss, etc. I won’t be conscious and I will be blissfully ignorant of the wreckage left behind. So I could spend time worrying about things that aren’t happening right now, or I can enjoy and love the people in my world and accept that no one (not even me) is indispensable. Those I love can grieve without my help. I think that’s my thought of the week: suffering is dramatically reduced when one opts out of indulging in preemptive worry or grief.

The other thing I told Mac was that when people try to comfort him by saying, “She’s in a better place,” they are only half-full of shit. I mean, look around you. Listen to the birds. Watch the kids stumbling and taking their first steps. Hear one piece of the billions and billions of pieces of music that have been written. Watch the way the sun lands on a house or a tree. I defy you to think of a better place than this. I fucking love this place. It’s an awesome world and it never ceases to surprise me or make me laugh out loud. There can’t be a better place. On the other hand, from the point of view of my physical body, there is a better place. When choosing between “suffering” and “not-suffering,” I recommend all non-masochists choose “not-suffering.” When I die, I will be going to a better place because I won’t deal with the daily discomforts and indignities and yes, often, pain that this body has dealt with in the last couple of years.

I learned a lot from my experiences with ALS, as well as my experiences writing this blog. Almost everyone has a story of loss or longing and almost everyone desires a way to find meaning in our lives that whirl past us so quickly. Almost all of us count our loved ones as our most cherished commodity and yet, so many of us don’t have or make time to spend with them. We want to stop and smell the roses, we want to fully embody gratitude in our hearts and minds, we want to be the best ‘us’ we can be, and yet the road is beset with detours and roadblocks.

I will gradually fade in people’s memories, so that even my son or my dad will have to look at a video or a picture to remember what I looked like and what I sounded like. This blog, whether it becomes a book or not, will be relegated to the shelves of both minds and/or libraries. Nothing lasts forever. The formidable boulder becomes a grain of sand swept away into the sea.All we have is now. I’m going to keep making the most of my now. I’m going to try to avoid preemptive sadness and I’m going to urge people who read this to…

...Yeah, I couldn’t finish that last sentence without sounding like a pompous full-of-shit windbag. I’m just dying, I’m not fucking Nostradamus. In fact, I’m not fucking anyone, which is far more disconcerting than dying. Imagine knowing you won’t have sex for the rest of your life. Doesn’t that make you want to go jump your husband’s bones right now? Shut down the computer and do it. Or surprise him at work with a blowjob. Anyway, that’s the kind of advice I’m better at giving. Dying teaches you how to live, but it’s very site-specific. Everyone has to learn it their own way.

I don’t believe that to everything, there is a purpose. I don’t believe in a logical, just universe. I believe in randomness. Having said that, if me dying has been helpful to anyone or made anyone realize the depth of love they have for this world or for the people around them, then I’m pretty pleased about that. I’m also really stoked that I’ll be eternally good-looking. Personally, I was not looking forward to arthritis, jowls, cellulite, or the inability to recognize when I was wearing too much perfume.

I have decided that while Mac and others may continue to post, this will be my final post. I’ve said everything I want to say and everything comes to an end. ALS has been calling most of the shots, but not this one. I get to decide when this great experience called the blog is over and I call it. It’s over.

It’s been an honor to have people read and comment on this blog. Thank you for everything you have taught me and for all of the kind words that have lifted my spirits. News will continue through this blog, including specifics about my funeral, which I guarantee you will be the world’s most hilarious funeral ever conceived by man.

85 comments:

I recently passed along your blogsite to a very dear friend of mine who is struggling mightily with the realities of her changing/ declining physical strength. She is fighting it to the point of exhaustion on a daily basis. I live in the Yukon and she is in Ontario and I wish I could be there for her as your friends have been for you. I hope she sees the beauty in the everyday. I hope she comes to a place where she can see that asking for help is not weakness. I hope she accepts that we offer help because it is the only way we know to carry a fraction, a minuscule part, of the burden that we desperately wish we could lift from her altogether.

Hey Carla,I had an improv class with you at COM, and I just wanted to say, before its too late, that you are an inspiration to me. I know its cliché, but I had to say it. I don't have an illness or anything, but I have been clinically depressed for a really long, and your blog has helped me to appreciate what I have. I no longer take showering and walking and going outside whenever I please for granted. I think about you, not in a creepy way... And I am glad to see that you are surrounded by all of these amazing people. Thank you for sharing yourself with the world. You might not be Nostradamus as you say in your blog, but you are someone to me and many, many other people.

I Love you, Carla. Thank you for all you're leaving us. I'll miss you, and will see you in so much of the beauty around me which you've helped bring into focus. Thank you for helping me love more and love better.Much love to you... Terre

Love your words... love the title of this post.. love the poem... love your brother's words.. love your spirit.. love it all....thank you for being so brave, honest and open... Your are soaring already...

Love your words... love the title of this post.. love the poem... love your brother's words.. love your spirit.. love it all....thank you for being so brave, honest and open... Your are soaring already...

There's now an unfillable hole in the Blogosphere, not to mention in my heart and soul. That said, while you will take a piece of me when you go, you've given bits and pieces of yourself that I will hold gently for the rest of my life. I wish you gentle passage...

I have no words to leave you with that are anywhere near sufficient. You have taught me sooo much over years and most recently how to love openly. When you made us all do that hand excercise about holding on to someone you love as tightly as possible...and then realizing not only could we not see inside our closed hand the thing we loved most, but we were then going through life with a fist instead of an open hand to give and receive love. That was such an "AH HA" moment for me. Thank you for teaching me, even after college, to be open to life, love, loss and most of all the beautiful humor that exists all around us, if we listen and let go of all the self-imposed cages of judgement and preconception. Thank you for being a constant inspiration and a wonderful friend and mentor. Thank you for sharing yourself with all of us Carla. You are a most treasured gift and I don't think I could ever forget you ;-) You will always live in my heart. I could go on, but as you said, you already know. I love you Carla!!!

Speaking of your funeral-We were talking about it tonight because I am going to be traveling a bunch this year and would hate to miss the "world’s most hilarious funeral ever". Lib and Kalin said they would understand if I wanted to cut our tip to the jungle of Brazil short if it came down to it, to which I replied "Thanks, but I think Carla would call me a fucking dumbass for doing that". Instead we decided that the 'event' should be made into a film so that anyone who misses it can see it, and that if we do have to miss it due to travel, we'll make sure to invoke the 'Auntie Carla Rule' an extra time. Love you bunches.

You blow my mind. I found your blog by way of Slim. I am going to read it regularly. I was thinking - all those wonderful gifts people give you and things they do with you and promise themselves because of you...now wouldn't that be a beautiful way for all of us to live all the time. You shine with the true light of Beauty. Thank you for sharing your journey with us.

If the translation of " you are a really cool dude" is that you are an amazing, transformative, inspiritational and pure soul, then you are the coolest dude I know Carla -- but even despite those lofty words--- you are just about the coolest, (Maclen may surpass you in his lifetime-- but for now - you are the dude, and the dude abides

You are a powerful teacher, improvisor, lover - yes, I have seen you fiercely love someone who needed it. Thank you for including us as much as you have on your journey. I have more gratitude now for the arthritis, the jowls, etc., etc., etc. The Auntie Carla Rule is terrific! Especially, thank you, thank you, for telling me I was wearing too much perfume. I still do, sometimes.

Dear Carla,Reading your blog has meant so much to me over the last couple of years. I've only met you a couple of times, but your beautiful soul has impressed itself upon me immeasurably through all that you have shared here. I hope you will forgive me for having disagreed with your assessment of Rabbi David at Alison's wedding. But it really doesn't matter, does it? I wish you great peace amd all the lovelight your heart can hold as you continue on your journey. Thank you, thank you, thank you a million times.~Sasha

Hello out there in the blogosphere. Or is it blogisphere? I have trouble spelling made up words. And Hebrew words. What is worse, I actually have no intention of spell checking this blog because…well… it's a blog.............................................

I'm starting over! Reread your 'First Blog' and I'm taking the ride again! See, the second I saw the title to this latest blog I knew without scrolling down this was going to be your last, and frankly, I'm just not fucking ready to stop reading. I've never known how to say good-bye to you, Carla, when you were healthy or now that you're dying. I just can't wrap my mind around good-bye when it comes to you.

You know what I do? I destroy relationships, because deep down somewhere I expect people are going to throw me away eventually anyway, so I beat them to the draw. Even now when I meet someone and we hit it off, all I can think is, "Wow, I sure do like this person. Its too bad they're going to hate my guts in a few months." But I've recognized this little character trait and I'm making headway with it. I actually have a few good friends who don’t turn and walk the other way when they see me coming...Most of the time. I tell you this because I want you to know that I know, I sabotaged myself and it’s my loss.

I love you, Carla. I truly do. I remember thinking how amazing you were when I was running your lights for 'Wedding Singer Blues' (I still have the poster). I would watch you, when I wasn't running to fix the breaker, and I would get lost in your characters. You moved me every time. When I'd watch you perform I felt like I was bearing witness to the next Lilly Tomlin or Carol Burnett. I felt so lucky to be me in those moments.

Still, for everything you are, a talented actress, singer, and playwright, it's teaching that will keep your spirit alive long after you're gone. Your face may fade from our minds along with your voice, although, I haven't seen you in several years and I can still hear your snort, but what you’ve taught us will endure.

You have touched countless lives. There are former students out there getting standing ovations, in part because you taught them. But it’s the people you’ve touched and are going to touch from the words you’ve written here that are endless. You’ve created a manual on how to live, and even more, how to die! You’ve done your job just like you always do. I don’t think you could have left us with more if you’d lived a 100 years, but I’d be willing to find that out if it were possible.

You’ve shined on stage, you’ve shined though this disease, and you shine in death. It is my true hope that you pass surrounded by family and friends, right after a great big laugh and an even bigger snort.

You are a WAY cool dude and a formidable boulder. And in my mind, you will never be a grain of sand. I will never forget you, and will be replaying the Carla memory reel of brilliant, hilarious, and refreshingly ridiculous ideas.

I hope they have your funeral at AT&T Park. I want to make sure I get a good seat.

Farewell Sweet Carla~ A woman after my own heart who encourages others to give blow jobs (the downfall of many countries I might add)that has always been the best advice I had to give. As I was reading your blog, I thought 'this has to be her best blog ever!' then I read it was your last. Goodbye sweet friend who I never met but know so well. You have given us all love and joy and much to think about. Many of our lives have changed by your words. Godspeed. May your travels never end.

Carla,You are one hot comet, searing across the sky, soaring out of reach and out of sight in the blink of an eye.It's all too quick.But those of us who eperienced your flame will be talking about the blinding, estatic shooting star for the rest of our lives.

Damn, Carla. I was doing pretty well with avoiding too much pre-emptive grieving, but the floodgates have just been opened, even though I know that ultimately it won't be sadness I'll be left with, but gratitude for having had the great fortune of knowing someone who helped me live and love better.

I think I'll follow your amazing brother's lead, and start my own personal Carla rule. When I get into my pre-emptive worrying mode that you know so well, I'll picture you boogie-boarding or dressed as a mermaid or gliding above a limo, and I'll remember to just bask in my life.

It's not quite working yet, but I know it will, and I pre-emptively thank you for that. And everything else.

Carla you are amazing! I can't thank you enough for the healing you brought into my life! ALS is so devastating I don't even know where to begin...but you were a way for me to make sense of it. Having a loved one afflicted is so difficult thanks for being here!! I wish peace and eternal merry making!! Much love, Maureen

I think I felt your choice to stop taking food before it was posted on this blog. I think I feel you sometimes. I think I feel you getting closer and closer to the point where you will be out of this dimension, the being human in a body dimension, and onto another one. . . how I long to accompany you past the veil, to know the marvelous, funny, bawdy, beautiful love goddess (or god? will there be gender in your next experience? who knows?!) . . . when I say I long to accompany you, I am not suggesting I am suicidal. . . it's just that, gosh golly, I wish you could keep blogging from beyond this physical life. I have a sense you'd make a kickass guide.

Your decision to write your last post and to tell readers it is your last strikes me as awesomely generous. It was like you were tending to your flock. I have felt you slipping away (its not rocket science, geez, if I know you have stopped eating, I know you havent got much left . . . ) but I was yearning to feel you read you one more time . . it seems so loving for you to share such a long, gorgeous gobsmacking glorious post, to bring us all into your experience . . and then at the end to say this is your last one.

I know I am babbling. .. and I wish I were writing cooler stuff, I wish I were being funnier and half as cool as you . . .

The world is full of gobsmackingly glorious beings, eh? I never met you and I love you so. . . as I sense into your dying, imagine myself feeling you depart, it can be like I am on acid and the whole world is alive in a gorgeous new way. . what if all the beings passing me as I move through endless streams of beings are all as awesome as you, Carla? And they are. Everyone is awesome and magical, bawdy, funny and cool. Thanks for helping me keep that in mind.

deep peace to you, Carla

joy love bliss

in 2006 I came close to dying, in intensive care for three days, very close to transitioning out of this life . . . I felt some of what you express in your last blog post. . .for a moment or two, I knew, I totally got it, that it didn't matter which side of 'being alive' I was on. . . I was totally ready to 'go' and totally ready to 'stay'. . . as I have read your blog, Carla, I have often had a sense of how lucky you are to have been in a space of knowing you are going . . . a limbic space drawn out over what 'looks' like a few years but might have actually only been a moment. .. this moment, this one, THIS one, is all there is.

Dearest Carla, You don't know me. I am--da-da da da--a lurker. Bwahahahahaha! I was introduced to your blog by your friend Molly Noble. Having decided to stop blogging, you may also have limited attention to spare for strangers. However, just in case...Thank you.

And, here's a gift you may enjoy: get someone to play the Jupiter movement from Holst's "The Planets" for you. The story is that when it was played at the symphony's premier, the char women who were scrubbing the back hallways of the Royal Albert Hall stopped working, stood up, lifted their skirts, and danced--a Carla-worthy reaction, I think. Light and love, Sally

in person, i have only met you once, by surprise, at yoshi's in SF after seeing shawn colvin. i was in such a state of gratitude to have been able to look into your beautiful eyes and speak with you face-to-face. i have journeyed this blog for the past few years, always in awe of you. thank you for all that you are, all that you have done, all that you have given and shared. thank you for making my life, all our lives, richer and fuller. i will never, ever forget you. be at peace, dear one. ~be at peace~

You're amazing, this whole blog is amazing, and I come back and read and reread it again and again. I am glad you're ending the blog on your terms, and I'm glad you opened up so much to all of us. You're a beautiful writer.

Thanks for everything you have shared. We're all dying . . . none of us really knows when . . . so your lessons are relevant to all of us. You're also quite an amazing writer . . . I hope this blog is published as a book. Maybe your son can autograph it for me. Bless you.

You will never fade in my memory or in the memory of people who have had the luxury of working and playing with you.

I can't really write the words to best convey what I'd really like to say. It kills me that this vibrant, crazy, red-headed comedienne from Canada is going through ALS. Just know that you will always be in my heart and that I'll always love you.

I will miss you so, so much. Even though we haven't really seen each other over the last 9 years or so, you'll always hold a place in my heart and mind.

Um, on a lighter and somewhat awkward note... I have one favor, and this is for when you arrive in Heaven and you've settled in and whatnot; can you ask God to bring about the Rapture?

shutting down the computer and jumping my husband's bones. turning off the insistent pre-emptive grief and anxiety that always seem to rear their heads about one thing or another. gonna make me some aunt carla adventures every year. and damn it, I'm missing you already. nope, we haven't ever met, but you are part of my life. joy joy joy among the flowers and ribbon and deeply loving people all around you.

And just in case there really is re-incarnation, we should agree on where to meet. How about the Brooklyn Botanic Gardens, or the MacDonald's across from New England Conservatory? I'll be the golden retriever that a lonely old lady is walking. You?

I love the tattoo, the poem, the flowers, your wisdom and wit, your spirit...you. Thank you for everything you are, Carla. You are a way huger inspiration than you can ever know; don't believe that little grain of sand thing for a minute-not about you!xoxoxoLaura

Thank you, Thank you, Carla, for touching my life as well as many others. You have inspired me in more ways than I can say, and I hold you as a role model to aspire towards. We haven't met in this lifetime, so you should know how far-reaching your inspiration has reached.

While I can't speak for anyone but myself, I will say that your smile will never need technological prompting for me to remember clearly. You have and still do touch my heart deeply. It seems very fitting, that you maintain control and decide when the time is right to write your last blogpost. I am thankful for this final gift of insight, humor, humility, and honesty. Rest assured Carla, I'm not the only one you've touched with the beauty of who you are, during your rich life. May your next journey be filled with love, Gerber daisies, copious amounts of sex, family, friends, hope, peace, great health, and childlike joy. The fight against this disease will go on, bolstered by your life, movie, beauty tips, blog, and courage. I know for sure that I am a better person for having had you in my life, even for such a short time. By knowing you, I have met so many other extraordinary people; like Megan. This/your fight is far from over. The day when ALS is no longer a threat to anyone will arrive. When it does, I hope you somehow know that you have much to be proud of. Finally, please consider my schedule before dying, since I definitely want to attend the funeral;)I love you Carla,Warren

Thank you Friend.I'm sorry you've had to deal with this shitbag fuckin' grotesque disease. I hated it when it took my Mom 12 years ago and I still hate it.When Mom was no longer able to speak she would communicate by blinking. One blink - noTwo blinks - yesThree blinks - I love youYou've been an inspiration to me.I've admired you as a teacher, mother, friend, sister.

CarlaYour words, humor, vitality of spirit, and grateful heart around the most shattering experiences, have been the most beautiful teaching and demonstration to me, and I know, to so many others. In my hardest times over these last years, I have remembered you, blessed you, and thanked you for your perspective, for your courage, and for helping me through difficulty.I thank you from my deepest heart place, for sharing your remarkable journey and for the absolute bravery you have demonstrated as one of your many parting gifts.Who knows what any of us are here to do, or how things will transpire? You have left us all with your greatest teaching demonstration- the way you live your life. May Grace surround you, in whatever form brings the greatest opening and peace...We will meet again, over and over in this great mystery... Shanti, Shanti, Shantilove nance

I, too, am following the "Auntie Carla Rule" from here on out. Altho I am certainly old enough to be YOUR auntie. There's enough scary stuff I haven't done to fill my life nicely and I thank you for the inspiration. Your guts will be my glory! I feel like I've said my goodbyes, and my thank yous, meaningless as they may be from another completely unknown person out here in the Rocky Mountains. You would have loved it out here - I think that often. More love to you, and Mac (for whom my heart breaks), and all of those who love you so well. Peace.

A now-long-gone dear friend was born a deformed dwarf and then she found out she had a rare genetic disorder that only dwarfs get called morquio syndrome. People with morquio syndrome have an average life expectancy of 19 years. However many years they get, they are all wicked tough. It aint easy being green and it aint easy being a dwarf and it aint easy being deformed (arms and head not in proportion to your torso so you look a little monsterish to most people. .. try being six year old with that body!). . .

My friend, long gone, lived to age 32. I met her when she was in her early twenties. For a time, she and her attendant, a guy with cerebral palsy who had lots of his own physical challenges but he coud lift Cheryl in and out of her van. The van was fitted with a six-inch diameter steering wheel and Tim would lift Cheryl into her wheelchair and she's roll into the van and the two of them would take off, Tim twitching jerkily every step of the way, Cheryl a gigantic head, tiny body, zooming at you in her chair. . .

It was genius for me to ask them to babysit. Cheryl and my kid were good buddies but in an emergency Cheryl couldn't tend to my daughter physically . . . but Tim could. Cheryl & Tim wouldn't let me pay them. They were ecstatically grateful to me that I 'let' them care for my kid . . .taking care of a kid gave them permission (which, of course, they never needed) to do all kinds of kid stuff with my kid. The zoo, game arcades, ice cream, amusement parks. . . they begged me to 'let' them take my daughter out and would not even let me pay her expenses. . . . I wonder what my daughter's memories are of those dates with Cheryl the deformed dwarf and Tim the twitching palsy. Those people loved her so much. And I loved all of them so much.

We always knew Cheryl was likely to die before my daughter grew up. Cheryl believed she was born into such an unusual physical destiny because in a past life she had taken her own life and she was given the deformed/defective dwarf container so she would learn that she transcended physicality, that who she was, who she is, had nothing to do with her body.

With morquio syndrome, one's bones disintegrate, turning into dust faster than the body usually disintegrates. Once the spinal cord collapses on itself, the person becomes completely paralyzed, completely unable to move, which means unable to breath and they die.

Cheryl had multiple spinal fusions, to prolong her ability to move. Man, that chick burned bright.

My daughter and I drifted out of her life because of a serious quarrel with a mutual friend and we were not in active touch with her when she died.

But the day after her funeral, without us 'knowing' she had died, we were sitting in my daughter's bedroom. My daughter and I almost never sat in there together. . . we had a large house where we hung out and she was a teen and fiercely protective of her private space.

Cheryl had once given me a glass cake topper as a xmas gift: a glass fairy, a really cheap gewgaw. .. cake toppers are very typically very cheap and not made to last. . . I supposed some use real crystal toppers but cheryl lived on disability and could only buy a 'cheap' glass fairy.

So. My daughter and I were sitting in the bedroom and suddenly the kid says "I dont know why but suddenly I am thinking of Cheryl" and in that instant, I am not making this up, the cheap-glass-fairy cake-topper broke. It was sitting across the room.

The next day, in the mail, we got the program from her funeral. We woud have gone to the funeral if we had known and when we weren't there, someone thoughtfully shared the program with us.

In the program, was a letter from Cheryl. She said that after she was gone, she would try to visit people and if she could she would try to let people know she was around.

I am sure Cheryl broke that fairy cake topper.

Carla, when you make your transition, I bet you will be able, at least for a time, able to let some of those you loved most dearly know you are around.In my spiritual tradition, the human etheric leaves the body at death but it takes a few days to leave this dimension (or whatever this is). . . .

...From too much love of living, From hope and fear set free,We thank with brief thanksgiving Whatever gods may beThat no life lives for ever;That dead men rise up never;That even the weariest river Winds somewhere safe to sea...

From the title with the Musical reference to the last line about your funeral, this post was the best I've read. Thanks for your honesty and for your willingness to share. And thanks for reminding us all to look around and love this world right now. I am. Ms. ALS December '09 is smiling down at me in the mermaid costume, even though it's May. You are in my thoughts every day.-- Karen L. from Albany

Carla,I cannnot get even close to describing all my thoughts and feelings when I've read your last entry. Just two small notes.

The auntie Carla's rule from your brother about doing 'the crazy thing' no matter how contrary to good reasons once a year rang right on. Mine for this year will be a week trip to Venice to meet with an old friend living in Germany. While Venezia is still there to see...

Second: looking at the posted pics, I realized that my house has never before been looking that light, charming, playful, whimsical - and will never be like that again.

Carla,On this late spring afternoon, I'm laying in bed with the old heart soggy about losing you. From my second floor bedroom, I'm looking out on the glorious cloud of white flowers that is the dogwood tree below me. You're helping me feast on the expansive sun dappled beauty of it all.

I cherish you dear friend in a million and one ways. I cherish reading your words (I see I'm not the only who has rushed to read and then re-read them). Your last post is a great gift to all of us.I cherish the community your blog has created.I cherish the amazing, gorgeous circle around you at this very moment--friends, caregivers, your beautiful Dad and Mac, the coolest, wisest dude of all.

I think the Auntie Carla rule rules! Thank you Jason! Count me in.

But here's the thing, even when I'm not skydiving or stepping up to my first poetry slam (okay, maybe not) I'll be holding you with me in moment upon moment of life becoming extraordinary and rich -- and even bittersweet -- thanks to some act of creativity, sass, music, art, exuberant love, truth telling, inspired community, hilarity, or simple dedicated attention. Add to the list deliciously meandering conversations and generous cups of tea or soy chai lattes.

I have learned and continue to learn so much about the art of life and about myself because of you.

I just watched the documentary about you at Hot Docs in Toronto and immediately came home to find your blog.

I don't remember the last time I laughed so hard in any movie. You're a cool dude and a hot babe, and it was a sincere pleasure and inspiration to learn your story. I will grab life by the balls a little bit more each day because of you, and I am very grateful for that!

Kat

p.s. I'm going to adopt the "Auntie Carla Rule" in my own family. What a great idea!

Carla - you are in our thoughts. Your blog is amazing - this last post is beautiful. However, I would totally disagree "... that even my son or my dad will have to look at a video or a picture to remember what I looked like and what I sounded like". Not a fat chance!

You have touched so many people and are such an incredibly strong woman.

It's gorgeous here in Vancouver today - perhaps a walk to Quilchena to sit under a tree is in order!

I too have just come from the screening of your movie at Hot Docs and will now get a chance to slowly make my through your blog. Thank you for sharing your life with us and being so open. You are definitely an inspiration and someone to learn life lessons from!

You are a beautiful inspiration. I saw the documentary about you in Toronto a couple nights ago and was moved by your humour, courage, lust for life, sexiness, the whole package. You are a wonderful teacher about how to face death and live life.

The Special Jury Prize - Canadian Feature was presented to Vancouver-based Academy Award-winning filmmaker John Zaritsky for LEAVE THEM LAUGHING (P: Montana Berg, Canada/USA), which follows mother, performer, and darkly funny smart-ass Carla Zilbersmith in her battle with Lou Gehrig's disease. Jury statement: "The Special Jury Prize goes to a film about an unimaginably horrifying disease that draws us in rather than making us turn away. The subject is someone approaching death, but the film is about how to live. We admire it most for bringing us into an intimate relationship between a mother and son without feeling voyeuristic or manipulative." Sponsored by the Brian Linehan Charitable Foundation, the award features a $10,000 prize courtesy of the Brian Linehan Charitable Foundation.

Many years ago you led a group of 1st graders in a song dedicated to me - their teacher. I don't think I ever thanked you enough for that special moment. So thank you now, sweet Carla. And thank you for sharing your wonderful wit, wisdom and love of life with so many of us for the past several years. You will not be forgotten . . .

Carla, I've been struggling with a husband with war injuries and PTSD who just when he was coming out of the dark had to deal with my illness. I have a disfiguring body disorder where my legs swell..and it may be permanent..but manageable..You have help me find the old me who would have said fuck it! I can still be a hot goddess with bountiful legs! And I am.In honor of this new found attitude, I gave my myself and my husband a gift..I rocked his world. Made mad monkey love! lolYou may not be Nostradamus, but you are the High Priestess of Love and Passion and Humor in our house !!! Thank you, my friend!I love you. My husband loves you.

I knew how this post would end, and put off reading the last bit. I'm selfish, I'll be the first to admit that. While I so want you to have peace, I so don't want to miss more of your wisdom, passion, and love. I wish I had met you in person - though two red-heads in a room together can be a bit much. I ran a marathon last weekend and thought of you when I was tired and realized that I would not make the time goal I had set. I reminded myself that while disappointing, at least I can run.

I saw Patty Griffin on Legends & Lyrics on PBS this week and she talked about how she has never felt brave and this was in her mind when she watched a documentary about Martin Luther King and listened to his last speech. You have made me think about being brave - and reflecting over the last couple of years of reading your blog, I can see that you stealthily instilled the "Auntie Carla Rule" into my life. I'll never again turn down a roller coaster ride. Here is the song Patty G. said she wrote after watching the MLK speech and when she was thinking of bravery. You may have already heard "Up to the Mountain", but it lovely to hear again and again.

Carla and Mac - I just recently saw "Leave Them Laughing" at the Hotdocs festival in Toronto. To say you changed the lives of those in the theatre would be an understatement. I feel blessed to have crossed paths with your story and lives.

My father passed away a few years ago when I was in my early twenties and our black humour got us through the whole process. It was so refreshing to meet, even through film, a kindred spirit who is just as effed up as us! I will keep your pilot light of adventure and love for the world burning!

I have been rereading the whole blog. On March 26, 2008, Carla posted this quote from Thornton Wilder's 'Our Town'

I leave you with this from OUR TOWN by Thornton Wilder who puts it as well as anyone, methinks. Emily has come back to earth in this scene. She's already dead. Her mother can't hear her.

Emily: …but, just for a moment now we're all together. Mama, just for a moment we're happy. Let's really look at one another!...I can't. I can't go on.It goes so fast. We don't have time to look at one another. I didn't realize. So all that was going on and we never noticed. Take me back -- up the hill -- to my grave. But first: Wait! One more look. Good-bye , Good-bye world. Good-bye, Grover's Corners....Mama and Papa. Good-bye to clocks ticking....and Mama's sunflowers. And food and coffee. And new ironed dresses and hot baths....and sleeping and waking up. Oh, earth,you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it--every,every minute?

I really wish I could have met you in person. Perhaps another time, another place things would have been different. Thanks for inspiring so many of my friends and colleagues. Your energy will never cease to be in those you touched.

Havent ever posted, never knew what to say. I read your blog all the time. Im just a random girl out there who has found so much enlightenment and enjoyment out of reading your blog. I'd like to say, for starters, that you have changed my perspective on the world. I sit ad bawl while reading your posts, which I figure you probably dont want. I cant help it. By reading your candid comments about death and dying Ive come to closure with a lot of my own personal feelings on the subject. My sister died when I was 4, she was 6. Ive always struggled. You help me look at death and laugh or shrug. Thank you for sharing your thoughts and feelings through all of this. I cant express how much Ive enjoyed it, appreciated it, loved it. I can say, from one stranger to another, that I hope you know that you are very, very loved.

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About Me

I used to be a solo performer, singer, writer, director, actor and college teacher. Now I have ALS so all that's left is writing. I'm curious. I have an amazing son named Mac who is 16 and wise beyond MY years and who tells me I'm good looking for someone who is dying and old which is worse than saying nothing but i still love it. I am playful and I love life more than I can express.